Brigid’s pregnancy with Richard was difficult and at 31 weeks she was told there was a serious problem.

Richard didn’t cry when he was born and is still unable to swallow his own saliva.

She was told to bring him home and he was likely to die as a result of a cot death.

With the help of the ‘Jack and Jill Children’s Foundation’, Richard, when he is not sick, is a very happy, placid and strong little boy. He is now three years old.

But still in 2013 there is no entitlement to support in the home for parents of children with severe brain damage.

‘Jack and Jill Children’s Foundation’ nurse Anne Reilly said nobody wants their child to be in hospital if they can get them home and that’s the joy of the foundation.

“Before I met Richard I was told he was very sick, but worse he had no diagnosis,” she said.

“Richard wasn’t dying but he was expected to. The joy of the ‘Jack and Jill Children’s Foundation’ is we can get nurses into the home almost immediately, with a little support Brigid and Aiden can still have a happy family life,” she continued.

“I am in awe of all our families, some you meet and you know they’re going to be a big part of your heart.”

Jonathan Irwin began the foundation in 1997 after the death of his six-month-old son Jack.

Jack was born a healthy baby but is suspected to have choked to death on his second day in the hospital nursery.

After he was resuscitated he couldn’t see, hear or swallow. He required 24-hour care.

Jonathan said the only reason they could bring their baby was home was because friends had volunteered to help nurse him around the clock.

“We took him home he laughed just once, he was in a lot of pain but we were together,” he said.

“So in 1997 we started the ‘Jack and Jill Children’s Foundation’ to provide home nursing for sick babies for everyone. Jack died at home six months later but our work goes on.”